A friend posted this article on social media this week. There is so much to love in it, but
“the presence or absence of a disability doesn’t predict quality of life”
is a key phrase for me. Last week, at the respite centre where I explore yoga with profoundly disabled children twice a week, I was unexpectedly asked to join a meeting and update the ‘Friends of’ the centre on how the work is going. Unbeknown to me, they’d just overwhelmingly agreed to fund my sessions for another year.
In many ways I am isolated in my work – most often it’s just me, and a care worker, and a child, finding out together, as I said in the meeting,
“How we can help this person find a little more ease in their bodies, minds, hearts, lives, you know?”
A space without imposed targets, without set goals. A place of consistent relationship, week in, week out, for three years now. The centre manager reminded me:
“When we started, even we thought we were being airy-fairy bonkers. That first night, when you got bitten, scratched and your hair pulled, we thought you were never coming back.”
I clearly remember at the time thinking that I was going to have to learn to really pay attention to what the children were trying to tell me if I didn’t want more bruises. Difficult behaviours are an emphatic form of communication. Don’t let anyone tell you that even children with profound autism aren’t interested in relationship. They just have less reason to trust you; less bandwidth for your chatter and social niceties; different ways of speaking to you.
Perhaps because of how I work, and the supportive environment I work in, I’m only beginning to understand how rare this kind of relationship can be, for these children, outside of their over-stressed, under-resourced families. The support those families receive is much more than the average adult with disabilities, but still, they interact with a bewildering array of gate-keeping professionals with large and ever-changing caseloads, and shifting targets and protocols. They can easily be passed between numerous social workers in a single year. When you’re managing large, changing caseloads, you tend to rely more on files and reports than forming relationships.
In my case, it’s exactly the opposite. I’m seen as such a specialist that only I can do the work. The staff are so used to my presence that they assume I know all about the children. I only see reports on new children if I ask for them. As my work doesn’t involve changing tubes or administering medication, most of the safety protocols in those files are irrelevant. Mostly I’m free to meet and get to know the children on our own terms, beyond a quick rundown of basic health and safety, communication styles and behaviours.
“She has hip dysplasia.”
“He signs with his eyes.”
“Careful – he can be a little grabby.”
The centre manager backs me totally, because she, like I, doesn’t put these children in conceptual boxes that label what they are capable of. These overwhelmingly non-verbal children have so much to tell me, some nights it’s exhausting to handle. On good nights, I’ve held many a wheelchair bound body in giggling tree poses. I’ve taught a non-verbal child ‘namaste’ and watched her make a point of saying it at the end of every session since. I’ve sat hardly daring to breathe as a young man with almost no previous impulse control quietly meditated with an LED candle.
And then one day, they leave. They move on to adult provision and we – the care staff and I – we fret. We worry that a file doesn’t adequately describe their quirks, loves and hates: the things we and their loved ones know about them as people. We worry that their family won’t be heard in fighting for ongoing provision of what they need to be happy and what they love to do most.
‘Did you hear that they let him have open access to the kitchen and so far he’s broken two toasters and a crock pot?’
‘Do you know if she’s still having her weekly massages?’
‘I’m afraid when they fixed up her bathroom she was reassessed and told she wasn’t eligible for respite anymore.’
Most of all, now, I worry how the world is going to meet them, when they aren’t small and cute anymore; when violent attacks against people with disabilities are rising, and both benefits and care support services are falling as fast. As a result, real people are really dying. I’m sorry – it’s not heart-warming, it’s not brave, it’s not a story of redemption, but it is true.
The problem with abstract philosophical arguments such as the one argued against in the article above, is that they take a collection of symptoms and hold them up as not worthy of the name ‘life’. And they’re right. Because no-one is just a collection of symptoms. No-one is their diagnosis. It’s easy to justify taking away home care support and thus keeping disabled adults in pads for days on end when you’re treating them as a syndrome rather than people with lives, loves and careers. If you ask people whether a profound disability has a right to live, you’re thinking about aborting a disease, rather than a breathing being who could bring untold joy into the lives of others. And if you ask parents to choose to euthanise their barely-born child on the basis of a diagnosis, you are denying them the chance to love the real person in their arms.
If you think disabled people and their allies are worrying unduly, you, like most people, are probably unaware that the German slide towards the social acceptability of Nazi holocaust was first justified with sterilizing and then euthanizing people with disabilities. In Action T4, disabled people were the first people seen as not having enough of a life to merit living; and the first into gas chambers. Read this article for more similarities between then, and now.
Fight the isolation and dehumanisation of people with disabilities. Sing their songs, tell their jokes, and include them in your gatherings. Make an effort to keep them, and the people who love them, in your tribe. Until our culture holds better stories about the reality of disabled lives, loves, struggles, tragedies and triumphs, this kind of abstraction – this denial of humanity – is going to continue, and maybe even get worse. Say their names. Don’t let anyone become just a statistic.
This summer, Phil and I have been (with permission) filming some of the children I work with: Myles and Ella, Brandon and his cousin, Owen and Charlotte, Dan, Amy and Nathan and more. I’ve shown the first rough cut to a few people, and mostly it made people tear up. Phil’s a great editor, it turns out.
We’ve got a lot of editing still to do, because these short clips have to be right. I don’t want you thinking these children are to be pitied. I don’t want you thinking that I’m healing or saving them.
I want you to see people with disabilities as complex individuals: funny and annoying and loving and stubborn.
I want you to see how much life they bring to my world and yours.
I want you to see how they struggle to find their way in this society, and how people like you and I can help.
I want you to see real people that are a vital part of your community, rather than a burden to carry.
Because I can’t imagine my life without them.
Above all, I want you to know that the presence or absence of a disability doesn’t predict quality of life.
How we respond to it, as a society, does.